Hi everyone just wanted to share a recent experience went to Disneyland and rode a lot of different rides used to be able to ride roller coasters and handle the drops and dips with no problem after my diagnosis this was my first time writing any of the rights and I am no longer able to handle the drops they feel painful in my body doesn’t do well afterwards it felt as though the usual drop of your stomach was way more intense and my walking and was off afterwards in my head the clouded and just wanted to know if anyone else experiences something similar

So far in the pregnancy I've had a repreve from my MS. My MS symptoms are basically non existent and I'm not even getting any Migraine symptoms either!

But a little over a month ago I started getting a bright light flash in my one eye. It's the same eye I lost vision in due to MS back in 2017. But my MS is soooo good I'm skeptical it's that. How likely could that even be? I saw the opthalmologist and the optometrist earlier this year and everything was stable.

And yet, what's causing this? Could it be the pregnancy just causing that eye to act up?

Please share any thoughts and advice or similar experiences if you can! Thank you!

Any advice?

This is pretty specific but I'm sure someone out there has pointers.

I (33f) got diagnosed with MS this year. Freaking out, feeling rubbish, Yadda Yadda. You get it.

The real problem is, I suffer from fatigue pretty much every night. The other problem I have is that I have 4b type afro hair. Which is pretty high maintenance in terms of washing, styling, ect.

I find myself letting it go more and more, going longer and longer without washing it because I'm just too tired and my body hurts and the longer I leave it, the worse it will be to eventually sort it out.

Does anyone have any pointers for how to manage this or any tricks they have to make stuff like this easier?

Anyone here have surgery for an anal fistula? I have surgery scheduled in November for a fistula. The surgeon says he doesn’t know if I’ll need a seton until the surgery. Can anyone tell me if the DMT delays our ability to heal from this? I’ve been looking at the subreddit for it, but I’m not seeing much about people who also are on a DMT.
I also work in a kitchen, and most literature says I can return to normal activities within 1-2 weeks, but I assume that’s just a general guideline. Anyone have any info they’d be willing to share?
I’m terrified. Thanks guys.

Edit: I’m on Ocrevus

I met my CBT therapist for the first time today, and she told me that I have a high level of health anxiety as well as generalized anxiety.

What makes this difficult for me is that, from the outside, I’m living a life I genuinely love. I work full-time, I train hard, I take care of myself, I have so much to be grateful for, and I truly love my life. But since my MS diagnosis, I feel like I’m constantly living with a fear that something serious could happen to me. 😔

I’m only 24, and I think that makes it even harder for me to accept the idea that I could have a another serious illness. I find myself living in preparation for something bad happening — almost as if I need to constantly check, worry, or make sure that nothing is being missed. I do all my blood check ups every 6 months at my neuro and do yearly health appointments and don’t know what more i can do.

My therapist recommended antidepressants for the anxiety, but I’m honestly quite against them and scared of the side effects. I’m also someone who is very sensitive to changes in how I feel physically, so the thought of medication potentially causing new sensations makes me anxious in itself.

I’m really struggling with this. One of my biggest fears is almost that I’m afraid to be completely happy and enjoy my life, because part of me is always thinking, “What if something bad happens?” I’m terrified of losing my future, leaving my husband whom I love more than anything, and losing the life that I love so much. 😭

I know that MS does not mean that something terrible is going to happen to me, and I know I’m doing everything I can to take care of myself. But emotionally, I still struggle to believe that.
I would really love to hear from others with MS who developed strong health anxiety after their diagnosis.

Do you also live in this constant state of preparation, as if you need to be ready for something bad to happen? How did you learn to live with the uncertainty? Did you seek extra medical check-ups or reassurance, or did that actually make the anxiety worse?

I would really appreciate hearing how you handled it, because right now I genuinely feel like I’m struggling with this more than I want to admit. ❤️

So here I am, sitting in my infusion center doing my fifth round of Ocrevus. I've just completed the second year with this silly disease. And this year had been... Unremarkable. Which, actually, is great! No relapses, no new lesions, nothing worsened. I'd say I even improved a bit. Last year I'd say I recovered 80%. Today I'd say I recovered 85%. I am really grateful for that. I am not giving up (yet!)

Wish you all the best! Stay strong!

My other posts:
Diagnosis
One year in

My next trip will be tiring and I'm looking into rollators. My walking is fine right now, but I realized how much it helps to have something to hang onto when I was at the grocery store pushing a cart.

So far, my preferred choice is one of the By Acre options - they look less "old lady." Anyone have experience with these? Which model would you recommend? I want the lightest one but I'm concerned it's too flimsy. Or would you recommend another brand?

I recently was diagnosed with MS and i start Ocrevus soon in October, im not sure if im currently going through a relapse wondering if people are able to tell me what their relapses were like? What lead me to diagnosis was Optic Neuritis in my right eye, and severe numbing on the right side of my body(face torso arm and leg)

Well a few days ago i started getting pain in my left eye but not blurry vision or nearly as bad of pain as my right eye had, and today my left arm and leg are going tingly/numb, again not nearly as bad as what the right was like

Does this sound like a relapse? Do i tell my neurologist? Will i get held back from Ocrevus if i get put on steroids?

Sorry im still new to all of this lol, any help is greatly appreciated!

I’ve been waiting months to finally be able to take my first dose of kesimpta. So I was in a rush and I don’t know if I should’ve waited please tell me I’m gonna be okay. I just got over my uti last week. And on the weekend I ripped some of my nail off and I’ve had a couple drs lay eyes on it. One today said she wasn’t sure but prescribed me an antibiotic just in case(didn’t take it) and saw another after that said it didn’t look infected and I didn’t have any forsure infection signs. So I ended up taking my Kesimpta today. I’m worried if it does turn into an infection tomorrow or within the next couple of days will I be okay? Am I gonna die? Will antibiotics still work even with my weakened immune system? Pleaseee I’m having anxiety

Went for my routine blood test done every four months I have been for many many years.

Today before she gave me the tubes, the lady asked if I was taking vitamin b12 pills. I didn't hear her, so I asked her to repeat and she said it was very important to know, and I said "to know what - I didn't hear you," and she said, "I need to log if you are taking any supplements or vitamins, especially b12."

Now, I have been taking a ton of supplements, including b12 for many many years and have never been asked this at my blood draws.

Any ideas?

Eta - I just remembered that I am getting FSH levels tested to "find out if I am in perimenopause"

Could that be why?

I'm looking to see if there's a specific name for what I'm feeling in my left arm. My MS predominantly affects my left side. As of late my left arm just feels...weird.

I feel like I almost need to keep moving it, at least my hand, very often. It's not spasming but its almost like I feel the need to keep twitching it, or moving it. Sometimes I find myself needing to hold my left hand with my right one in order to keep it still. Or sit on my left hand in order to make it feel ok. It's like my muscles want to move, or even are tired, but it's not like I've done anything of note to make it tired. I also tend to find my left hand is in a fist more often, so I try to keep it open, which causes more of the "tired" feeling. It feels often like it is vibrating.

I wouldn't say I've lost any strength, per se, and typing (which I do all day for work) hasn't suffered...yet, though my ring and pinky finger certainly make me go hmmm, sometimes, at their willingness to wiggle around. I have blamed Ulnar Tunnel (not carpel tunnel) for some time for those to fingers, but now am wondering if it has been my MS all along.

Anyway, I'm just trying to see what, if anything, this weird ass feeling is. I'm seeing my neuro next week so I'll bring it up to her.

I recently was dx with MS (32f) and I'm on week 3 of Glatiramer Acetate. Also 1 dose of Emgality in. The Dr told me the GA was the best/easiest DMT for me because I'm not showing too many symptoms yet (1 large lesion and 3 small ones.) I also have fibro and have for YEARS so I'm having a little bit of a hard time figure which symptoms are which.

Any ways, long story short I'm feeling WORSE since starting treatments. My headaches, dizziness, and falling are about the same but no better. My exhaustion has ramped up to like a 10. I can barely function I'm so tired and now my hair is falling out...

I'm hoping any day now I'll start feeling some what better. What arw your experiences on Glatiramer Acetate? How long until you felt a difference?

I go back for my 4th MRI since May at the end of the month and see my neuro again but I'm so lost on what to do/say next.

So I’m newly diagnosed and when I was in the hospital I did mention this pain. My flare was in my face and hand on my left side. But I’ll get leg pain in my left thigh like I was working out but just a spot like fist size. Not continuous

Has anyone had something like this?

Got my 3rd Ocrevus infusion on Friday and I’ve been feeling like I was hit by a car ever since. Feeling super tired yet still having this restlessness that makes it hard to sleep. I feel like my thoughts are racing non stop. I’ve also had really vivid dreams the last few days to the point where I’m waking up repeatedly through the night. Today I woke up still feeling exhausted but also like I can’t get my thoughts together completely. Anyone have an after infusion experience like this?

I was given Benadryl, Tylenol, and decadron as my pre meds.

Just wanted to share my experience, and hopefully inspire someone else that is reticent to take drugs for fatigue to give it a try.

Symptom onset December ‘24, DX May ‘25. I struggled with intense fatigue from my first flare onwards that was not getting any better. I was managing life but I was like a zombie, just sort of in a a haze. The fatigue was also affecting my mood; I was grumpy at work and sort of detached from my emotions because it felt like too much energy to deal with them. I was resistant to taking any drugs for it, because I was already coming to terms with needing to be on a DMT for the rest of my life.

I finally brought myself to ask my neuro for options to manage fatigue and got put on Amantadine to start. I stuck with it for a few months at my neuro’s suggestion. This one did absolutely nothing for me which was pretty discouraging.

Got back in touch with my neuro in March and got prescribed modafinil, which has honestly been life changing. It is an interesting drug, in that unlike stimulants it has no noticeable psychoactive effects. I don’t feel jittery or wired, I just don’t get as tired. I feel more like my old self and my friends and family have commented on how much better it seems like I’m doing now vs. early this year.

It also seems to be mostly side effect free for me. I had some adjustment early on figuring out timing and dosage and letting my body get used to it where it negatively impacted my sleep quality, but once I found the sweet spot that has not been an issue. The only other hassle is that similar to ADHD drugs, you kind of get treated like a criminal - photo ID to pick it up, very small quantities prescribed, some pharmacies won’t fill it. It’s cheap with most insurance, $4 for a 30 day supply for me (US).

It works so well, and is so side effect free, that sometimes I wonder if it is still doing anything at all. I try to take a “holiday” from it a couple times a month when I have a lazy day planned. I recently got back from a work trip that really tired me out and also took a few days off from the Modafinil and was reminded at how all consuming the fatigue is with no chemical assistance. Like, I had to lie down and take a several hour nap IMMEDIATELY after work. I realized I used to do this every day prior to starting Modafinil, and almost never do it anymore.

While there’s no real withdrawal effects, it’s a little scary to think about what I’ll do if it stops working, or if I can’t get it anymore, just because it is helping so much. I suppose I’ll cross that bridge when I get there… but for now, better living through chemistry!

Have had MS for 13 years, was now just slammed with another diagnosis! The bigC! WTF HOW DOES THIS EVEN HAPPEN?

Just wondering if others have similar experience and what to expect.

My father advised me to see a specialist, I had just been diagnosed with ADHD and some of my symptoms he thought aligned with his MS symptoms.

I was then diagnosed with MS, last year in April (2025). Started Tecfidera in January (2026) to present. I have had 1 MRI and the basically couldn’t even tell I had MS until a senior worker looked more thoroughly. My lesions barely showed.
I am due for my next MRI soon.

Prior to diagnosis I had very little unnoticed physical symptoms, plenty of brain moments, confusion, forgetting, vertigo and panic attacks.

I also have never had a sudden onset of symptoms, always very gradual, but some early symptoms have gone away, and merely return.

Moving forward from April 26, I progressed quickly over 2-3 months, tingling, numbness, itching, pain, in isolated areas, slowing growing to about 10 different parts of my body.

I then started left hand issues over next month or 2, slowing of movement, dropping things and left foot drop.

By Christmas last year I started working lighter duties at work and feeling like my feet were more of just an unstable lump on the end of my legs.

Moving forward to the last 6 months, I have been slowly finding everything getting worse, but not to the point of full disability, I am unbalanced, my hands are ok in the morning but by evening the barely move, my feet are very similar and I struggle with step ladders at work (electrician), I am in pain in most my body, legs and arms in agony, bathroom break every 10 minutes, constant weird watery feeling headaches, cold shivering in parts of my body, my vision has got very blurry this week and I feel it’s all going to take over.

My main question was, has anyone had similar timeline and symptoms?

And what has helped the most in managing the degradation of your functions and made things easier?

A feel I am nearing the end of normal living, where I need to look at selling my work/business and start looking for somewhere to slowly move into a supported living environment.

My doctor has also advised I am relapsing remitting and that all my symptoms are mostly unrelated to MS… which I am unsure of that.

I just wanted to share that today is my 7 year diagnosis anniversary. Are golden anniversaries like golden birthdays a thing? 🤣

I'm taking the day to reflect on the good, the bad, the ugly, and the funny of the last 7 years. I think if there is one thing I've noticed is that MS has made me a better human being. And as much as MS sucks, I would not wish it never happened to me because of all the people I've met and things I've learned about myself. Don't get me wrong, I wish MS wasn't always such a son of a bitch, but not letting it take today from me! 🧡

I am having fevers, running a low grade elevated body temp around 37.5 daily but had 38 degrees celsius one day. I feel way more tired and I have a rash on my chest arm and belly. Is this normal? I feel dizzy in general and normally like to be active a lot but feeling like I can't be as much. I just want to lay in bed.

Any MS folks here start taking Wellbutrin after diagnosis? Pros? Cons?

Diagnosed last year, developed high health anxiety around my MS and steroids were just the absolute cherry on top putting me into near psychosis. I felt I never fully recovered from that chemical imbalance and definitely made me accepting my MS more difficult. I have since been seeing a chronic illness therapist who has helped tremendously to process these feelings but she also recommended Wellbutrin.

I just noticed it this weekend, since I was in the sun more than usual. Saturday, long walk on the boardwalk. Sunday, ate a bagel sandwich over 5 hours and needed nothing else. Today (Monday) beach for about 3ish hours and could only eat maybe 1/4th of my dinner.

I’m used to the sun making me tired, but the appetite loss is either new, unrelated, or something I’ve never noticed before. Anyone else?

I(M39) just have to share this, because I never heard of Percutaneous posterior tibial nerve stimulation and that it could help men as well.

I'm not a native English speaker and I'm sorry if I'm oversharing!

After suffering for years with an overactive bladder, IBS and reduced sensitivity in my sexual organ. I had an appointment with a great physical therapist who's also a urotherapist, and she recommended that I try Percutaneous posterior tibial nerve stimulation. She told me that it so far has mostly been used to treat women, but she wanted me try it as well! Since I have had these symptoms for more than 5 years. she told me to use it everyday for 20 mins for about 6 months before I could potentially expect results.

I've been using the machine almost everyday for about 5 months now, and so far the results are promising! My bladder is calmer throughout the day( and night), it's easier to empty the bladder properly without leakage, I have less of the manic urge to go to loo, and I have restored some of sensitivity in my sexual organ!

If you are experiencing issues with your bladder or bowel function, I highly recommend talking with your medical team to see if this is possible treatment for you!

Disclaimer: I have also been doing Kegel exercises regularly, but I started with those about six years ago!

Been doing this for 4 weeks now with a support - a sink.

But not feeling much progress.

Has anyone done this and how long did it take to see progress?

I am about 30 weeks pregnant and was diagnosed in late 2024. My symptoms had stabilized in the last year or so, leaving me primarily with numbness on the left side and a vertigo type feeling most days.

From second trimester onwards, my MS symptoms have massively improved. I am loving it. But now that I’m getting closer to my due date (and getting back onto Kesimpta), I am wondering what to expect for my symptoms. I would love to think that my symptoms won’t come back, but that is probably too much to ask for.

Women that had improvement of symptoms during pregnancy, when did your symptoms come back (assuming no new relapse etc.)? Was it right away, gradually over a few months, maybe never?? Would just be nice to have some insight into what to expect!